Hello, I have Fibro/chronic pain that is not properly controlled?

I have Fibro, Chronic pain back pain such as bulged and herniated disks. I have been taking Effexor, Lyrica and Tramadol (which I quit taking recently cause it did not seam to help) and of course Tylenol (every 4 hours) and Ibuprofen. But I am still in constant pain. The Doc's do not seam to understand that the Meds I am prescribed are not proving proper pain control. I still struggle daily to get through the day (work & home life). Does anybody have any suggestions for me?

Responses (9)

How have you been taking the tramadol. I've found that you have to take it on a regular basis, not as needed. Once the pain gets started tramadol isn't going to help. I take 100 mg every 6 hrs, it takes the edge off, but that's about it. One thing is that its impossible to get rid of all fibro pain. Its very hard to deal with. The docs tend to not want to prescribe anything else because everything else is a controlled dr. Have you seen a pain management dr. I worked with fibro for 45 yrs, full time and more. You have to push thru the pain. No one will understand how much you hurt, or if you're grouchy why you are. You look like nothing is wrong. It gets demoralizing I know. You have to have mild exercise every day, even a short walk. I have mornings I can hardly get out of bed, but I know if I stay there I'll just hurt worse when I try later. I pace myself.

When I do things around the house, I work for a while, then sit for a bit, then back to work. It takes longer to get things done that way, but at least it gets done. I just packed up everything then drove 7 hrs in a truck, all by myself. The only help I had was loading and unloading the truck. I could hardly walk for the next week, but I still got my kitchen unpacked and clothing out that I needed. Now I'm working a bit slower. My furry little boys felt they didn't have to help with their toys, lolol.

Hello Kaismama,I had been taking Tramadol for 6-8 months at least (?), and took 100mg every 6 hours as well. My Prim. Doc wanted to ween me down on the tramadol (even though my pain was still bad) for some unknown reason. SO As I cut down to only 50mg every 6 hours.. I eventually just got so frustrated with the pain and dosage that was not helping, I eventually just didn't refill my scriped.. After not taking it for a few weeks, I didn't notice much of a diff in my pain level. It was still just as bad as when I took the Tramadol... now (a new doc, since I moved as well) is truly trying to help me, but has not given me anything to help with the constant daily pain. She did prescribe me a temp scriped of oxycodone for my bad rib/ T7-T8 bulging disk pain until I get my epidural done. But that is not meant for my daily pain (I have 17+ hr days between work, kids, home life). And although it helps somewhat.. I know that scriped is temp and I only helps for a 1/4 of my day..SO Frustrated with this pain..

Girl you need to go to pain management. I don't know why drs want to think treating chronic pain is like treating acute pain, and the amount that most docs know about tramadol you could fit in a thimble. I think its one of the most misunderstood drugs out there. 50 mg every 6 hrs did absolutely nothing for me. I used to take the extended release and it was alot better, but its very expensive and my insurance won't pay for it. I've taken it for 10+ yrs and I understand how it has to be taken to be effective.

Oh, the one thing I forgot, is walmart has a cream called sports rub that really helps my legs when they ache badly. I've dealt with this pain for 60 yrs, but some times it just gets old. After driving that truck over the worst road in the country, my back was in bad shape, and would you believe my own mother chastised me for being grouchy...

Kaismama,I'v been referred to see a PM Doc, but the problem is that for some reason (probably all the abusers out there that feen for drugs and don't need them) it is extremely difficult to get into a PM Doc. I'm in MN and all the PM clinics I'v called want all of your info from current & prev Doc's before THEY will decide if you are important enough to even make an appointment. Its just crazy.. I'v been waiting to find out if I am "excepted" to one clinic that seams very good at what they do. Its a big wait game though! Thanks for the chat, Ttyl!

So so true! I hate having to go to the bathroom because I can hardly walk! Then I go back to bed even if just to watch a show or read (listen) to a book! When I get up I hurt when with meds on board. Exercise is the magic key to feeling better with FM and chronic pain. It only takes minutes to stove back up! I know it hurts to get up and take a walk or just do small chores but I also know if you don't get up and about your just gonna hurt more! Nanimal

I'm new so don't know much yet, just learning by listening... But after I left the hospital, ( two knee replacements) tramadol, save my life,Really helped the pain, while the knees healed... 3 months, but it wasNot easy getting it from my doctor... my physiotherapist ( to strengthen)The new knees, said some patients who don't get the pain killers cannotDo the excercise s that YOU HAVE TO DO... Thank you, all of you, love being able to talk and learn, on this site!P.s. I wish I had it now for my Myofascial arm pain, but I know I couldn't get it... he gave me Lyrica, which helps a bit! At least I can function on it!

Hi Ingenue,Welcome to the group! I'm pretty new to it myself. I couldn't agree with you more!! When I went through 8 months of physical therapy, it was quite difficult to deal with the pain it caused. Which would last 3-4 days after the session, then I would go to again a day or 2 later and the pain would start all over. I'v heard that Tramadol helps a lot of people, but for some reason it just doesn't really help me with the strong pain. It did help with the aching FMpain before I started Lyrica, But the Lyrica actually helps better for that. Its this strong pain that it neither helps with.

AN

Anonymous1 Oct 2013

I can only say I've tried the above drugs with no success I'm now on clitropalm amitriptyline oxycodone paracetamol and I'm only just getting referred to a chronic pain clinic after nagging my gp so went round them all and wanted to send me to a psychologist went mental and complained to customer relations at the nhs only now am I being listened to cause like you I'm in major pain

AN

Anonymous1 Oct 2013

I can only say I've tried the above drugs with no success I'm now on clitropalm amitriptyline oxycodone paracetamol and I'm only just getting referred to a chronic pain clinic after nagging my gp so went round them all and wanted to send me to a psychologist went mental and complained to customer relations at the nhs only now am I being listened to cause like you I'm in major pain

Opioids are not recommended in the guidelines for fibro pain. That is why most docs wont prescribe them for fibro. The guidelines warn doctors that opioids can make fibro pain worse due to rebound pain. Tramadol is the only opioid allowed in the guidelines. You also have back pain though, which they will sometimes prescribe opioids for. Is your pain primarily fibro pain or is it back pain? If it is primarily fibro pain, regular daily exercise is your best treatment and this one is hard because the last thing you feel like doing is exercise but like Km says, you have to push through it.

If your pain is primarily back pain, seek pain relief for your back and not fibro (dont really mention the fibro-let them know the back pain is the generator) I mean I'm not telling you to lie but just be sure to communicate that the pain is from your back and play down the fibro portion that way they follow back pain guidelines which do allow opioids at some point (usually after conservative treatment fails). This is only if the back pain is the primary source of your pain. If your primary source is fibro, taking opioids will start you in a vicious cycle because in taking the opioids, you will cause yourself more pain. It will be okay until the pills wear off then you will reach for more pills because the rebound pain is worse than before so it gets to be a very vicious cycle and you dont want to go down that road.

I have just one question, who writes these guidlines? Anyone who really suffers from the pain themselves? I know opiods don't help me except to sleep, but I sure wouldn't just decide for other people if it worked.

Well First of all, That is why I am asking if there are any suggestions from anyone about what I should do. The last thing I want to do is take ANY Narcotic... I was on disability for three years from the first car accident I was in (there were 3 more after that one). I was heavily medicated due to the injury I suffered. I want to know if there is anything ELSE out there because Tramadol does NOT help my pain. Secondly: I'm honestly not sure what the majority of the pain is coming from.. I have pain in my neck, ribs, entire back, arms, legs, feet.. however The all over aching pain did get better since starting Lyrica. But this is diff pain. More like a sharp, stabbing pain. I'v been dealing with this pain for eight years. I know it will always be there. But I just feel like there has to be a better way to control it. :(

I agree with dzoobaby. She is one smart lady. I dont know much about fibro but I have bulging discs too and am in constant pain. Fortunately I have a good doctor who is willing to help me. I I have not found the cure I was looking for but am getting some relief with physical therapy and medication. If your epidural does not help or your doctor can't or won't do anything to help you maybe you could get another opinion. A back specialist or neurologist,new MRI, a referral to a pain management doctor. I just started a new round of physical therapy and I think it is going to help. There are many options available and you deserve some pain relief.

Sorry to hear that you are in so much pain. Things seemed to be on the up and up when we last communicated. You are still waiting for your epidural and a pain clinic appointment, so it is a case of what can you do in the meantime. I am assuming that you FP will continue to prescribe oxycodone until you have your epidural. If you take your Tylenol with the oxycodone it will enhance the effect of the oxycodone. As you are unsure of the of the cause of your pain (is it the discs or FM) I think it is going to be a case of back to basics with regards to the FM as you state that you have wide spread pain. Hot bath/ shower, take rest periods throughout the day, heat pads and massage. A reduction in your working day hours may help.

I went thru all that stuff you all are talking about and what helps me the best (and I understand you don't want to take narcs.) but sometimes that's all that works! I make up a cocktail of several meds in the am and that gets me thru most of the day and then if I hurt at night then I just take my break thru meds. My cocktail is; OXYCONTIN 80 MG, DILAUDID 4MG (break thru), MOTRIN 800 MG and VALIUM 5MG. That's my am cocktail alot of ice packs! It works most of the day then if I start feeling more bad pain or a flair up I take the 800 Motrin and if needed some Dilaudid. Motrin helps me the best when I get flair ups! This system took about 10 years to figure out what was best for me. I have taken all those meds the others talked about and I wasted my time. I also believe in sometimes LESS IS BETTER!! You don't need to take more and more to try to feel better. Try less, its better for you too!

Hello NA & bIIGood idea to take Tylenol, Ibuprofen and Oxycodone together. However I would recommend that you have someone with you the first few times that you take your medications this way, just to make sure that you are OK. If your FP stops your Oxycodone before your epidural try Tramadol again and take it in this configuration.Again I would advise that you have some one around the first few time.

Hello nanimal,I know what you mean, it takes a lot of trying different things to figure out what helps. I was just wondering, do you have only Fibro? Or other back/pain issues? The reason I ask, is because as everyone helps so clearly pointed out.. Doctors seam to not think that pain killers work for Fm.. So I was just wondering if they actually prescribe you them for it or another issue?? Just curious! I completely agree with you about the less is more comment. That's exactly why I quit taking the tramadol! It didn't seam to help that much, so why put it into my system :)

With whatever you do you always need to first talk to your dr and you also need to gradually stop taking your meds. If your dr says its ok just to stop cold turkey then its ok but alot of the time you need to bring it down slow! At first I only had Fm and they put me on depression meds and anti-inflammatory meds none of these worked for me. Then the dr said a list of things like Chronic pain syndrome, mps, degenerative disk disease, deg. Joint disease, osteoarthritis, chronic bursitis etc... You might want to ask others with just FM to see if that is true (I don't think so myself) if pain meds do or don't help. I do know they help me! Also remember that Tylenol is not good for your kidneys and that if your given vicoden, lortab, percocet, Norco and others like that all have Tylenol in them. That's why I stay with Motrin because its ibuprofen and for me it works better for inflammation. Others say Fm and mps don't cause inflammation.

The main thing is for you to find a good pain management dr! I also agree if your thinking about a cocktail reg. Make sure you ok it with your dr and pls DO have someone with you the first few times. Hope your feeling better soon! Nanimal

Hello, I also find that tramadol helps my fibro. I have been diagnosed with FMS for 25+ years. However, when it's really bad I have found that I have to "blast" it with meds. I take 2 flexeril and oxycondon, hydrocodon or Tylenol 3 (Tylenol with codeine) along with .5 mg of ambien at night. If I do this I find that I can break the pain cycle. Don't know if others do this, but as others have said, it takes a long time to figure out how to deal with the pain. "Breaking" the pain works for me in addition to taking at least one day of rest. I call them the "lost days" when I have to just rest, watch tv and veg out. I know that when I have commitments for a number of days I will likely end up in significant pain because I have had to push myself.

Then I have a "lost day" On those days I have learned to not self criticize, that I have to do nothing, but allow myself to listen to my body and know that I will be able to be up and about in another day or 2. Because most MDs don't understand FMS or CFS, those of us who have these conditions have had to learn to "self medicate" in learning what works for us. I must admit that I have a renewed understanding of people with emotional issues who have self medicated with alcohol or other "illegal"drugs. It is a daily struggle to only take the medications I absolutely need and to learn to deal with a certain level of pain for which I take nothing. That's what makes this site so good. Others really do understand what you're going through. The "silver lining" is that you become more understanding of others and the chronic pain they deal with, be it physical or emotional. Be well. BRuthD

Hello Everybody. Just an update on my pain.. Turns out the disk they did the epideral on is bad. I need surgery on it... Im very scared about all of this, anybody else have surgery on a disk? How was they're experience??

Hello bll86I am so pleased to hear from you. I think that you should post a new question about disc surgery. I feel it would get lost amongst all the other responses for this question. I have a degenerated disc in my back (L5-S1). In the UK they do not remove degenerated disc.

Hello everyone! It has been SEVERAL Months since I 1st posted this question, so a lot of you may not remember me :) but I wanted to UpDate you all:Since we've last talked, I ended up seeing a spine Doctor that I actually ran across online. This has been the best thing that has happened to me in NINE Years (As far as Health goes that is). It turns out that my Degenerative Disk at Level T7- T8 was also Herniated as well. (Even though all the other Doctors I'v seen for this in the last Nine years have always told me that disk was not bad & couldn't have caused me any pain..)

Well, I ended up having surgery on it a few weeks ago and I can already feel the relief. I do still have Post-op pain of course, but the pain in my Mid-back, shoulders, arms and hands has subdued dramatically. I am honesly starting to question weather I actually have Fibro or if the pain has been from injuries from my car accidents this entire time.. I do have pain in other areas of my body still, such as hips, lowback, etc. but could it just be from other injuries that these Doctors have been ignoring, or is it fibro. ?? Well no matter what it is.. I guess persistsnce has paid off :D

Hello Bll86 and a happy new year 2 U. I am pleased that U R that U R improving, may B that disc was coming in2 contact with a nerve. It is possible that U may not have FM a rheumatologist can assess U 4 that but with disc issues one should also assess for Chronic Myofascial Pain. U can research this and see if it sounds like what U R experiencing. Devin Starlanyl website is a good place 2 start

You've already gotten a lot of good information here. One of the main things you need to remember is that we are all different and that different regimens work for different people.I've been suffering from back pain due to degenerative disc disease, osteoarthritis, bulging discs, etc., and I've tried just about every treatment there is. This includes steroid shots of epidural's.For me, opiates do work and make my life livable! Without them, I am pretty much a vegetable -- lying in bed watching TV, then moving to a chair because I need to be in different positions. I cannot remain in the same position for any length of time without my Oxycodone. I can't even take a short walk around the block with my dog if I don't take my pain meds.

I have depended a lot on my husband for help for many years now. I'm very thankful to have him! I have instructed him to let me know if he ever sees me "nodding out" while on my pain medications or if I appear to be "loaded" in any way. I witnessed this happen with my mother-in-law while she was on pain medication, and it's the last thing that I am aiming for. I realize that I will never be completely pain-free, only able to function better in everyday life.One more thing I want to add is that I cannot take the large amounts of aspirin, ibuprofen or acetaminophen that are contained in Vicodin, Norco, Percocet and the combination drugs because I have Hep C. For this reason, I take oxycodone and only take ibuprofen as needed for breakthrough pain. I would be on an extended release opiate except for the fact that I cannot afford it. I save hundreds of dollars by taking oxycodone rather than OxyContin!

Everyone responds differently to meds, but I must tell you that Trazodone has greatly helped me from being very disabled and in pain, to very few symptoms of fibromyalgia. I have been able to keep increasing the dose through the years which has also helped. And Trazodone is not a pain killer. It is a very old anti-depressant which I still need another anti-depressant to treat my depression.

bll86, I suffer from some pretty severe fibro, CFS and also lupus. I have been on a dozen different pain meds since I was diagnosed 28 years ago. Seven years ago I had a car accident that I shouldn't have walked away from, but I did. It caused some serious back problems and a concussion. I find that I need the opiates. I take Percocet at the moment but it's not doing much.

Doctors are afraid to prescribe ANY opiate or controlled substance. The FDA has tightened the regulation of these drugs so much that some doctors will not prescribe them. My doctor is on the verge of opting out of issuing controlled narcotics because of the reporting mess they have to go through to do it. She demands a drug urine test every time for every patient every month - even the 92 year old woman I know that has been going to her for 20 years.

The doc put me on Cymbalta twice a day a couple years ago but I have never felt any change in the pain. I can only take one Percocet every 8 hours... I combine that with Tylenol, Aleve and pray for the best. Feel lucky if you can get any medication for the pain.

If it is just your back, rest a lot and seen a good doctor that knows both the fibro and the spine. There aren't many, but you can find one if you search around. Good luck and if you find that doctor let me know. I will travel if I have to to be able to get rid of my back pain.